3:57pm June 11, 2014

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Strangers and cousins

The increased attention generated by my presentation drew more people to come to the ANI exhibit for information about us, and many of them became members. We were reaching the point at which our members no longer all knew each other; individual ANI members could be strangers to each other. For ANI to continue as a meaningful social entity, it had to be an entity that provided a common “home” even for people who did not have personal relationships with each other. I think it is this sense of being a “home”–a context for people’s lives as a whole–that distinguishes a community from a simple organization.

Another development during the 1993 conference was the recognition of a new segment of the ANI community, and the adoption of a new term to refer to it. One of the people who had been corresponding with ANI members online, and was attending this conference to meet with us in person for the first time, was not autistic. He had hydrocephalus, another congenital neurological abnormality. In our online discussions he had been noticing many similarities between his experiences and characteristics as a person with hydrocephalus, and the experiences and characteristics of autistic people. At the conference he met Kathy, who was not online at the time and did not know who he was. He introduced himself to her, explaining that he was interested in exploring similarities between himself and autistic people. He briefly summarized the effects of hydrocephalus in his life. Kathy considered this for a moment, and then warmly exclaimed “Cousin!” (Cousins, 1993). From that time on, the term “cousin” has been used within ANI to refer to a non-autistic person who has some other significant social and communication abnormalities that render him or her significantly “autistic-like.” The broader term “AC,” meaning “autistics and cousins,” emerged soon afterward.
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Jim Sinclair, Autism Network International: The Development of a Community And Its Culture

The man with hydrocephalus was Stephen Drake. Kathy is now known as Xenia Grant. Both of them played instrumental roles in developing the ANI-dominated part of the autistic community (among others), and the concept of cousinhood. Stephen Drake has done a lot of other disability rights work as well. Xenia, by the way, is the most friendly and outgoing person I’ve met in my life, and also one of the most visibly autistic people I’ve met in my life. And Stephen was the first person to ever be called a cousin, thanks to Xenia. He also helped save my life recently through his efforts with Not Dead Yet. And has been active in all kinds of disability rights organizations outside the autistic community.